After we received the official “High-Functioning Autism” diagnosis a year ago for our son (9 years-old at the time), we knew we’d need to tell him but weren’t quite sure how we’d do it or how he would react to it. After talking with good friends, whose son is also on the spectrum, and praying about it we decided to approach it by focusing on his brain and how it works differently.
As an aside, while saying goodnight to him in his room on the evening of the same exact day we received the official diagnosis from the psychologist but before we told our son, his eyes suddenly lit up and he excitedly blurted out,
My brain is SOOO different!
It caught me off guard and gave me goosebumps. Did he know? Unless he could read my mind or read the papers from the psych, we hadn’t said anything about this to him before. My heart calmed down when he explained that he’d been reading about the brain at school and how different everyone’s brain works and he found it all quite fascinating. For a few months, “the brain” was the main thought going on in his own brain. He talked about the brain, asked questions about the brain, read all he could about the brain and decided he would become a “brain doctor” one day.
We decided to use his current brain fascination as the lead in the conversation we had with him shortly after the diagnosis day. After family prayer, we asked him to stay with us on the couch before sending him to bed.
“Son, remember how we’ve been talking lately about your brain and how everyone’s brain works differently?
“And you know how we’ve been going to different doctors for a few years now to try and help you with your emotions and anger?”
– Slow nod, anxious eyes, as if he’d forgotten but now remembered…or maybe he thought we he was in trouble.
“Well, after meeting with Dr. X, we’ve learned that – your brain really is cool and it works very differently than many other people’s brains. In fact, your brain is so cool and different that there’s an even a special name for your kind of brain, do you want to know?
– He looks at us, intrigued.
“It’s called high-functioning autism.”
We let him take that those words in and then explained it a little more, telling him it doesn’t mean he is sick or that there is anything “wrong” with him, it just means that his brain works differently.
We told him that because of this, sometimes it’s harder for his brain to do things like control emotions and focus on tasks or make good choices. We told him we were going to help him, together we are all going to help him, so that even though this is how his brain works and even though it’s harder for him sometimes, we’re all going to help him learn how to do things as best as he can.
It was a good, simple conversation that I’ll remember forever. Later, after he went to bed, my husband and I felt relieved but also unsure how – or even if – he would respond to this news.
In the weeks that followed, we only mentioned it to him again if the situation called for it. If he was having a hard time focusing or treating his siblings nicely, we used that as an opportunity.
“Son, remember what we told you? About the autism? Well this is an example of how your brain has a harder time with focusing or paying attention to others’ feelings.”
“Son, I know this is hard for you – because of the autism – but I’m trying to help you work hard to focus.”
We weren’t really sure though if he understood – or even remembered – what we told him about having high-functioning autism. Until one morning, before school in the kitchen, he came over to me with a shy smile, like the one he makes when he’s been thinking about something and wants to share it but maybe feels a little funny about it, and then enthusiastically declared,
I have high-functioning autism!!
I stopped mid-chew. I was awake now.
I turned and looked at him, a little shocked and intrigued. I asked what made him suddenly say that and he just kind of shrugged,
“I dunno know, it just popped! into my brain and I felt like saying it.”
Ok, then. I guess he had listened to what we told him and had been thinking about it.
I asked him if he had told anyone else about it. We hadn’t planned on making any type of announcements to anyone but closer family and friends until he was ready (er, I mean until I was ready). He said no at first and then…
“Well, I kind of told Bill (a friend in his fourth-grade class at school). Bob (another classmate) told us he has ADHD. So I told said, ‘Well, I have high-functioning autism!'”
“Wow. Ok, then. That’s great!”
We told him that was ok to tell others as long as he was ok with it. And that was that.
All that worrying I’d been doing about how he’d react and if he’d want to tell others. It’s funny how one can agonize over something and then, in one simple word or conversation, realize –
It’s all going to be ok. Chill.
I realized in that moment that my son is growing up in a very different time than I did, a time when “being different” isn’t so different after all. A time when one kid can say, “I have ADHD,” and another respond that, “I have high-functioning autism” in the same way one might have said, “I have blue eyes,” and the other “I have brown.”
He went off to school that morning but I thought about what he said all.day.long. I guess I was just surprised and a little taken aback. I had just found out myself that he definitely has this and was trying to process it all. I had only started sharing the information with family and close friends, and then, just like that – he’s not only ok with it for himself but is ready to blurt it out to his classmates.
It wasn’t him that wasn’t ready to share…it was me.
A new feeling grew in me. Pride, a good kind. I felt proud that he did pay attention to what we’d told him and that he had been thinking about it. Proud that he felt comfortable with it and even wants to share it with friends at school. Proud that he was kind of excited about it when he’d talked about it – like he’d learned something really cool about himself.
Because he did.
I had felt afraid of how he would handle this information about himself, afraid of how we would navigate letting others know about it or not. Again, God showed me
TRUST ME. I GOTCHA COVERED.
Later that same day, while I prepared dinner, he suddenly blurted it out again with much more enthusiasm – like he’d been practicing it in his head all day and was finally ready to hear the words out loud.
I HAVE HIGH-FUNCTIONING AUTISM!!!
I stopped mid-stir, warm tears welled up in my eyes (or maybe that was the onions?) and my heart swelled with gratitude and pride. I gave him a big squeeze hug (he loves when I give him squeeze hugs) and asked if he’d been thinking about that a lot. His eyebrows shot up, along with his arms, and he loudly proclaimed,
“Yes!!! I’m just SOOO interested in it!”
Wow! Ok then, that answers that question.
My son has high-functioning autism, he knows he does and he’s proud of it!